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Second time treating and second time losing hair!

Posted by tracestew @tracestew, Sep 19, 2023

Hello everyone! I'm on my second time treating NTM. The first was 2019 (Azithromycin, Ethambutol, and Inhaled Arikayce). I did that for 18 months. My eyebrows and lashes fell out, and my scalp hair thinned horribly. Was off the meds for 23 months, and the hair on my head grew right back. My eyebrows were only just now filling in.

I just started back the two pills at beginning of August. I nebulize with 7% saline at least once a day, sometimes two. In the past few weeks, I've noticed that my eyebrows are dwindling, and my scalp hair is noticeably thinner. It's very short, so I can really tell that there is loss.

I'm 57, so the first time I thought it was hormonal, but now I'm convinced it medicine-related. Has anyone else had hair loss as a reaction to the medicines? I have no other conditions, except Bronchiectasis, so no other meds. I hesitate to bring this to my GP because I can only imagine the rounds of tests she'll want to do. I'm really at a loss and, quite frankly, annoyed.

Thanks for any input!
Trace

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suzyqueue | @suzyqueue | Nov 30, 2023
In reply to @sueinmn "Suzy, you are the only other person I ever heard of that had both, like I..." + (show)
@sueinmn

Suzy, you are the only other person I ever heard of that had both, like I did. Are you treating it at this time? Mine turned out to be related to another health issue, and resolved over time. But my ophthalmologist keeps an "eagle eye" on my eyes to be sure the effects don't reappear.
Once my thyroid normalized, I got my hair back - but dark brown mixed with gray instead of dishwater blond and no gray.
Sue

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My Graves is in remission at the time being. But yes....I've gone through a period or 2 with having to treat both at the same time. As a matter of fact, doctors think that I may have contracted the MAC during a Graves flare since the thyroid meds can decrease your immune system. The thyroid is a crazy thing. My symptoms from the Graves can be more debilitating than the MAC.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Nov 30, 2023
In reply to @suzyqueue "My Graves is in remission at the time being. But yes....I've gone through a period or..." + (show)
@suzyqueue

My Graves is in remission at the time being. But yes....I've gone through a period or 2 with having to treat both at the same time. As a matter of fact, doctors think that I may have contracted the MAC during a Graves flare since the thyroid meds can decrease your immune system. The thyroid is a crazy thing. My symptoms from the Graves can be more debilitating than the MAC.

Jump to this post

I'm glad to hear you are in remission - I have been there long enough to only need thyroid screening once a year at this point, and once every 2 years for some long-time thyroid nodules.

Yes, my Graves was discovered during a thyroid storm after an ortho surgery - an alert hospitalist stepped in when the ortho surgeon ignored the nurses calling him every 15 minutes. She probably saved me.
Sue

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suzyqueue | @suzyqueue | Nov 30, 2023
In reply to @sueinmn "I'm glad to hear you are in remission - I have been there long enough to..." + (show)
@sueinmn

I'm glad to hear you are in remission - I have been there long enough to only need thyroid screening once a year at this point, and once every 2 years for some long-time thyroid nodules.

Yes, my Graves was discovered during a thyroid storm after an ortho surgery - an alert hospitalist stepped in when the ortho surgeon ignored the nurses calling him every 15 minutes. She probably saved me.
Sue

Jump to this post

Mine was during a storm as well. Graves actually threw my heart into afib and I had a cardiac ablation done to prevent it again. So now that I have to have ct scans done for the MAC, my endocrinologist and team of MAC doctors say "no iodine contrast".

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